Create and update the volunteers contact sheet and assure the caregivers have access to it.

ORGANIZING THE CARE TEAM for the OUTPATIENT AUTOLOGOUS STEM CELL TRANSPLANT

How we organized:

The patient and the primary care giver (PCG) contacted the patients friends and co-workers with the news of the recurrent Non-Hodgkin’s Lymphoma cancer, the needed stem cell transplant and the subsequent need for care givers.

The primary care giver met with the patient’s co-workers to explain the process the patient was facing, what was needed of them while the patient was still in the workplace, and to solicit their help.

The patient and primary care giver created an Excel spreadsheet containing the volunteers:

Names

E-mail addresses

Contact phone number

What they were volunteering to do

The volunteer’s availability and preferred types and times of service

Whether they had been through the 2 hour care-giver training at the Blood and Marrow Transplant Clinic (BMT).

With a blank monthly calendar form (attached), the PCG began filling in volunteers’ potential coverage times within each day block.

Once the in-home care givers had agreed to the schedule of care, we proceeded, trusting we could call one another if we needed a substitute.

In-home, overnight care-givers brought their own sheets, towels and food.

In-home care duties consisted of:

Ensuring the patient’s safety

Daily cleaning of her bathroom and the kitchen area and the vehicle used to take her to the daily BMT clinic appointments.

Changing the patient’s bed linen every other day

Doing laundry: patient could use a towel only one time, and needed clean, comfortable clothes every day

Grocery shopping and food prep. No restaurant prepared food or food prepared under circumstances that did not meet the BMT Clinic’s Neutropenic diet guidelines (introduced at the 2 hr. training).

Driving the patient to and from the clinic for daily appointments.

Picking up Rxs as needed.

Trying to get the patient to eat whenever possible, preferably nutritious foods

Watering house plants weekly or as needed.

Assuring the patient takes Rx as directed, keeps records of body temperature, and intake and output, especially liquids, and gets to the BMT clinic each day with the records.

Vacuuming and dusting of areas the patient frequented twice a week.

Putting out trash and recyclables on appropriate morning.

Providing comfort, hope, humor and care without being intrusive.

The team all wanted up-to-date information on the patient’s progress, so sending frequent up-dates to them was important. Our care team appreciated daily updates.

The yard team members rotated responsibility among themselves for mowing, watering of the lawn and yard plants and potted flowers. The yard teams’ duty lasted through the entire summer as the patient may not do any yard work for 6 months following transplant.

A Stem Cell Transplant Patient’s Advice to Caregivers

Take care of yourself. With so much of their safety and care riding on you and your well-being, it’s very important that you and all caregivers care for yourselves as well. Look for opportunities to build a pool of caregivers who know how to safely transport, feed and otherwise support the transplant patient. The more that these responsibilities can be shared with others, the more opportunities for respite caregivers have. When this isn’t possible, call on the offers from family members, friends and neighbors to relieve you of some of your other daily chores. Let someone else do the laundry, mow the grass, or make dinner for the kids so you can go to the movies, take a walk, or do whatever gives you an extended break. Daily clinic visits will offer you a few hours of down time from your caregiving duties. Make the best of it.

Every patient is different. While this may seem obvious, it’s easy to forget after participating in pre-transplant training sessions. There are real risks involved in stem cell transplants (aka blood marrow transplants or BMTs) done on an outpatient basis. Good health care teams go to great lengths to make sure that patients and their caregivers understand those risks and how to mitigate them.

But training manuals and training sessions can’t be customized for every patient, nor can health care professionals anticipate every way that an individual patient’s experience might vary from what they’ve seen other patients go through. As a result, training materials will anticipate worst case scenarios and prepare you for them. It would be irresponsible to do anything less. Just remember that the person you are caring for may be an unlikely candidate for a worse case fate. I found that the nurses who provided most of my care once I was diagnosed and had a treatment plan in place were pretty good at identifying which patients would handle treatment well and those that would have a harder time. I heard them talk about things like attitude and maturity; but most of all I heard them talk about the importance of a patient’s general state of health when he or she entered the BMT process. Healthier folks tend to fare better than those with diseases in addition to cancer and whose general health is already poor.

Pay attention to what you’re taught in training and keep the information you’re given handy because you may need it. But pay attention, too, to the person that you’re caring for and don’t assume that he or she will need every bit of the care that training materials discuss.

Be prepared for curve balls. Every good caregiver wants to do what is best for the person that she or he is caring for; but sometimes what’s best can’t happen. As part of our training for the BMT process, we were told that I needed plenty of protein, ideally 104 grams every day. The precision of that goal sank in and my in-home caregivers—saints that they are—felt that it was their responsibility to see that I achieved that goal. What none of us anticipated was the devastation that the chemotherapy I received the week before my transplant would have on my digestive system.

We were warned that the chemo I would receive the week before the transplant would have delayed effects that could be especially hard on the mouth. But nothing prepared us for the pain of swallowing caused by the Melphalan I received the week before. Neither the Magic Mouthwash nor the low dose oxycodone that were prescribed did much to dull the pain. Consequently, I didn’t eat or drink much, to the great consternation of my caregivers who were afraid that they were failing me. Even the liquid protein products that they had made sure I had on hand were too hard to get down.

I watched the weight of the world slide from one of my caregivers during a clinic visit when she heard the doctor all but dismiss the fact that I wasn’t drinking or eating. He knew it was temporary and that the health care team would keep me infused with critical liquids and nutrients during my daily clinic visits. But neither of us really understood that until then.

So once again, take your training to heart; but be prepared for curve balls. That’s why the daily clinic visits after Day Zero are so critically important.

Too much emerges day by day to plan too far ahead. Don’t torment your transplant patient with questions early on about the foods they like and what they think they’ll want to eat. Once their taste buds and digestive systems have recovered there will be time enough to treat them to their favorite foods. But during the days or weeks just after transplant let them tell you what they think they’re up to eating and drinking. Do what good basketball players do and keep your knees bent so you can pivot quickly. Frequent shopping runs may be in order to adjust to the patient’s changing tastes.

Let the patient do the safe things that s/he wants to and can do. The transplant process will zap a lot of the patient’s strength and stamina. I remember days when I wondered if there were any oxygen-carrying blood cells left in my body! I was winded after taking a shower—with the pre-shower Press N Seal preparations to cover my catheter and sometimes a backpack of drugs and portable infusion equipment to contend with. Even so, it’s important that transplant patients stay as active as they can be, despite the many restrictions on their activities. Outpatients have advantages over inpatients because they have to get to and from daily clinic appointments and they have opportunities to do “clean” jobs like putting away clean dishes and folding and putting away clean clothes. Encourage patients to walk around, to climb stairs when appropriate, and do what they can to maintain strength and agility. They need both to withstand the effects of treatment and achieve the speediest possible recovery.

If really hot in car, place meats/refrig. items in a cooler with ice pack for transport

Never leave groceries in car before delivering

PatientAddress: _______________________

Patient Phone: ___-___-____

SHORT GLOSSARY OF TERMS/PROCEDURES for AUTOLOGOUS TRANSPLANT

Allogeneic Stem Cell Transplant. Used to treat blood marrow disorders. The stem cells come from a donor whose tissue type best matches the patient. Best donors are brothers or sisters. Other donors may come from a national registry.

Apheresis. The process for removing the patient’s peripheral stem cells and filters them in advance of their being frozen until infusion.

Autologous Stem Cell Transplant. Mainly used for lymphomas and multiple myeloma. The patient is the stem cell donor. Peripheral stem cells are harvested, filtered, then frozen while the patient undergoes high-dose chemotherapy to destroy cancer cells. The stem cells are then thawed and re-infused.

Bone Marrow. A liquid found in the bone cavity. Marrow is usually drawn for testing from the pelvic bones. Hold patient’s hand. This hurts.

Engraftment. The patient begins making his/her own stem cells following infusion.

Informed Consent. Detailed information on the transplant processes and risks that the patient learns and agrees to prior to proceeding with the transplant. Other advise and consent meetings may include financial, social services, psychologyt and nutrition staff as well as the Dr. or advance practice nurses.

Intravenous Central Catheter. A large infusion line inserted in the upper chest wall used for high-dose chemo infusions and reliable collection and infusion of peripheral stem cells. If peripheral stem cells are collected or infused through smaller bore lines, such as a PICC line, the cells can be damaged.

Neupogen. A drug used to stimulate the production of white blood cells.

Neutropenic Diet. A special diet program for patients who have compromised immune systems as a result of reduced white cell counts. The diet protects the patient from food-borne infections.

Peripheral Stem Cells.Stem cells in the bloodstream.

Platelets. Are cell parts that seal damaged blood vessels and help blood to clot.

PICC Line. A line usually inserted in the under arm used for chemo infusions and blood draws. Can have 1-3 heads used for infusion lines that should be flushed daily.

Stem Cells. Produced in the bone marrow for the most part, and are constantly dividing to make new blood cells. Once blood cells mature, they leave the bone marrow and enter the bloodstream (see Peripheral Stem Cells above). Red blood cells carry oxygen. White blood cells fight infection and make immune cells.

I had an autologous stem cell replacement in 1998 for Inflammatory Breast Cancer. These instructions are much more sophisticated than the instructions I was given. I would like to recommend that the caregiver do his/her best to see the patient receives sedation for the bone marrow biopsy. If the caregiver drives the patient that should not be a problem. I drove myself and couldn’t have sedation. It was the worst pain I ever had, comparable to broken ends of bones rubbing together.